Eating Induced Seizures - What's causing them?

[debanks]

Hi There,

I'm new to the forum and have been struggling with Eating induced seizures.

I have had all kinds of tests which have all come up negative or not related;

2 X MRI scans
2 X EEG's
Echocardiogram
Tilt table test
Several ECG's
Oral glucose tolerance test - Reactive Hypoglycaemia diagnosed
24 Hour fasting glucose test - No problem


I am currently not on medication as initially the seizures were so infrequent that I did not want to take drugs for the sake of it or mask the root cause.
The first 5 seizures were on average every 3 months, having eaten Ciabatta bread, Potato dishes, pasta, noodles & a roast dinner.
Now I have had 3 in a month all eating breakfast cereal with milk (porridge, shreddies, gluten free flakes).

Could anyone shed any light on what could be causing these seizures?

Thanks for reading and I really look forward to anyone's help,

David

 

[RobinN]

David this sounds similar to my daughters situation. Your glucose tolerance test was not normal? Rebecca's hit a low at the third hour. I am diagnosing it as Reactive Hypoglycemia since I have not received any help from the doctors. We did try medication prior to my diagnosis, and it made the seizure patterns much worse. In fact awful. I can only assume that it threw off her levels and made her quite wacky and unstable.

It appears to me, and I am not a doctor or in the medical field, but you are consuming too many simple carbs. The body converts these to sugar, and this overwhelms an already congested liver. You could also be sensitive to dairy. So if I were you, I would cut out all the refined carbs, and dairy. I would stick with veggies, organic proteins, a few low sugar fruits, and see if you aren't feeling better.

It isn't a quick fix, but over time I would presume that you might feel better. It can take 6 months for your body to clear itself of gluten and two months for casein.

 

[debanks]

Hi Robin

Thank you so much for such a quick reply!

My next plan was to go gluten free for life (if it works!) and maybe dairy free until my intestines recover. The frustrating part was that I had a celiac blood test 8 days ago and I have to wait about a further 10 days for the results. I would like to to cut it out now, but have been recommended to wait until I have had a biopsy done to confirm.

The oral glucose tolerance test was done when referred to an endocrinologist. I drank a large high sugar drink then waited 4 hours whilst hourly urine and blood sugar tests were done. I came out with a blood sugar of 1.87mmols (approx 30mg/dl) and left the hospital shaky and dizzy. I did not have any type of seizure though. This was termed reactive hypo.

All the seizures I have had have been whilst eating or just after finishing a meal - no other times! Also I did not have any low sugar symptoms which makes me think its not hypoglycaemia causing it.

Another factor could have been dehydration prior to eating the meals.

I hope you get some tests or help from the doctors for your daughter on the hypos, I have found I had to push hard for tests as Im sure you have found. I have had 2 Neurologists, 2 Endocrinologists and my next step will be Gastroenterology to get answers!

David

 

[batman]

David, you might be in a similar situation like I am.

Ever since the mid 1990's, I have spoken to multiple neurologists, multiple primary care doctors, even a few gastroenterologist, and to me, talking to doctors and "specialists" is like talking to a wall. What I kept telling, and still continue to tell doctors, is that my seizures occur roughly 6 hours after eating. And the strength and type of my seizures depends on what and or how much I ate. Just was not ever able to narrow down what it was that I ate that triggered my seizures.

Anyway, a few months ago my mother asked me to do some online searching for information concerning "gluten and arthritis". And part of what I was finding in the search results was that gluten can trigger people to have seizures. So I recently made some changes in my diet by avoiding gluten, and so far, I haven't had a lot of seizures. Finally, after having seizures since Feb 1987, I may have found what's triggering my seizures, on my own. There are a variety of 'Gluten Free' products available on the market. If you like cereal, look for a box of 'Honey Nut Chex' cereal, and if you like raisins in your cereal, buy a separate container of raisins and add some raisins to the Chex cereal. I have and it's gotten me hooked on it.

 

[Molly97]

David,
When you mentioned roast beef, it struck an all too familiar chord for me. Beef contains high amounts of glutamate, which if you are sensitive(and I am), can lead to seizures. I have to be very careful about the amount of beef I eat.

I encourage you to check out the GARD that is here under alternative therapies. I have been on it for a year and it is working. As well as avoiding gluten, I avoid dairy products, corn, soy(this is a major thing for me), and aspartate(nothing diet for me!). It is a major change in my diet. The only other thing I do is take 1gram of magnesium a day. My seizures have gone from several a day to several a month.

I agree with Robin that the meds can mess you up; I know they did it to me when I was on meds.

 

[RobinN]

http://www.coping-with-epilepsy.com/forums/f39/epi-improved-w-gfdiet-md-report-5532/

I am not clear as to why they suggest that you wait to go GF. It isn't harmful at all. They certainly never wait to suggest that you take a medication. Going GF isn't easy, so perhaps they want to spare you the hassle, but it makes us more aware about the lack of quality in many of the foods that we do eat. I cook cleaner and fresher now. Still attempting to eliminate refined carbs, even if they are GF.

My daughter never had symptoms of low blood sugar, other than the fact that the majority of her seizures happen at the same time of day. It ranges from around 10 am- 1 pm. Her blood sugar when the EMTs arrive has had a wild high range, but I was told each time that occurred, that it was a stress response due to the seizure. I didn't buy it. She works out every morning, and there was a reason her body was reacting this way. We finally saw some results on the glucose tolerance test. I too believe it is a reactive hypoglycemia.

I am giving enzymes most days, though I am not good about this as it is needed three times a day. I agree that most meat produced is raised on gluten grains. So organic free range is necessary if you go GF. Dairy free is something that needs to be addressed as well. Again, it is a new relationship with food.

Bruce - that is very exciting that the change in your eating habits has improved your situation. Please understand that it can take up to 6 months for gluten to be eliminated from your intestinal tract. So I hope when you have been GFCF for a year that you see even greater results.

 

[debanks]

I'm definitely giving gluten and dairy free a go and see how I get on.

The reason why they ask to wait is if you start the gluten free diet the villi in the small intenstine can supposedly heal quick enough to give a false negative result on the biopsy.

I may start to re introduce dairy 2-3 months down the line if I'm improving.

These seizures started when I was 25 for the last 2 years and I am sure it is some sort of digestion/malabsorption problem. I also have found it hard to keep a good weight up, just dropped below 11 stone for the first time for years!

I hope the gluten free diet works!!onder:

 

[debanks]

Molly.. interesting you mention about the glutamate. I have had once or twice a week a product called USN muscle fuel sts (meal replacement/protein & carb shake), which contains glutamic acid and aspartic acid. I wonder whether its worth avoiding these? I have to say though, I had actually felt better after these shakes and have never had a seizure near taking this product.

Batman, I am glad its working for you this new diet, thanks for the tip on cereal will look into that. Its definitely strange that the food I am eating is having such a quick effect and giving me the seizure mid meal. It makes eating an anxious time, but as soon as I start to feel comfortable and dont worry - thats when I have a seizure!

 

[Molly97]

David,
One of the things most problematic for me while I was trying to sort out my seizures was the fact that I would not feel well while cooking dinner and then, within 30 minutes of eating, seizure time. At the time, I chalked this up to low blood sugar; I've learned since that a great deal had to do with the actual foods eaten. Particularly bad for me was eating a large portion of pot roast or eating chicken-fried steak with milk gravy. The most distracting moments came when I would be in the middle of eating a meal and I'd pass out. This had nothing to do with blood sugar levels; I have a meter and checked it numerous times following these episodes. Since going on the GARD, these two problems have resolved themselves. I encourage you to go to www.dogtorj.com and read up on his essays concerning seizures and diet for people. Yes, he's a vet who deals with a lot of seizure-ridden dogs; he's done a lot of research on this gut/seizure connection both in people and their pets.

IMHO, I would avoid those shakes until you can figure out what is triggering your seizures. From what I've read, the things that we're most sensitive to can, in the short run, make us feel better; I've heard it referred to as a kind of food addiction.

Going on the gluten-free diet can take anywhere from 6 months to almost 2 years to change what's going on in the intestine. I'm surprised your doc wanted you to hold off on starting the diet because it would show up a difference short term. That doesn't gel with what I've read. As far as leaving dairy alone, I've read that dairy puts a coating on the villi that resembles library paste that keeps your intestine from properly absorbing nutrients. I've been off dairy for a year; I've never felt better and would never add it back in.

All in all, I encourage you to read Dogtor J's essays and make a decision.
Hope this helps.

 

[RobinN]

Wonderful news Molly!

 

[Molly97]

I am very pleased

:clap: